DCIS in 2 locations in right breast, just diagnoed last week

countdooku

I was just diagnosed last week.  Here's what's happened so far.  It's been a bit of a whirlwind over the last week.

1. 5/17 - had biopsy #1 on right breast

2. 5/21 - phone call from radiologist telling me that I have DCIS in that breast. They took a 10 mm sample out. Said that they wanted a 2nd biopsy on same breast based on mammogram & ultrasound pics showing some very faint calcifications in another location. *sigh* I said I want to talk to breast surgeon first. Had a good cry on the phone with the radiologist.  Radiologist doctor was very kind. He was great.

3. 5/23 - appointment with breast surgeon, who recommended 2nd biopsy. Had 2nd biopsy a couple of hours after the surgeon appointment. Also on same day, had chest x-ray & EKG as prep for future surgery & lab work.  Breast surgeon was awesome, answered all of my & husband's questions.  Breast surgeon said no chemo required, the mammogram caught this really early. Was given appointments to meet with genetic counselor, radiation oncology & a cardiologist + an ECG (based on what my EKG results were).

4. 5/28 - got phone call from breast surgeon. SHE called, not the nurse.  Got results of 2nd biopsy.  It also came back positive for DCIS like I thought it would.  8 mm in size. Surgeon

5. 5/29 (today) - had ECG, which was easy (ultrasound of your heart, I've had 1 before, my heart is fine).  Then appt w/genetic counselor. Should get those results back around the end of next week.  Those results will determine whether treatment options are bilateral mastectomy, mastectomy + reconstruction, or lumpectomy x 2 + 4 wk of radiation.  Genetic counselor was great.

Then in 2 days (this Friday), I see the cardiologist so he gives his blessing to the anesthesiologist.

Then next Tuesday, I see a reconstructive plastic surgeon for a consultation AND I see a radiation oncologist for a consultation.  My husband is a bit overwhelmed and doesn't want to talk about any of this.  He doesn't want me to get a mastectomy, wants me to go the lumpectomy route.  But I've got 2 DCIS spots on the right breast, not 1.  Am very grateful today for these boards.  I've been binge-reading lots of prior posts.  going to a breast cancer support group next week.  I spoke last weekend with some ladies who have gone through this before...a couple who went the lumpectomy+radiation route and a couple who went the mastectomy+reconstruction route.  You know...because, well, there's the side effects that the doctor tells you and then there's reality.  As in, sometimes a doc will say "You might feel a little uncomfortable" compared to the patient's experience might be "yeah that was more than a little uncomfortable."

In a little over a week, we've almost hit our family deductible for the year.  Yay!  Haha.  One of the admitting people now recognizes me.  I stopped in at the cancer center's gift shop and spoke w/the volunteer running the cash register...she, too, had breast cancer, and my breast surgeon operated on her.  She sang the breast surgeon's praises, so it's a relief to hear a glowing review like that.

I have 2 daughters - soon to be 11 and 13.  We've told them.  At first, they were worried & shocked but now they're ok with it.  The breast surgeon said 98% survival rate.  So I feel pretty lucky yet totally stressed out all at the same time, if that makes sense.

countdooku

I see the cardiologist later this afternoon...to get cleared for surgery.  I'm interested in what that Dr has to say.

I got a call yesterday from the radiation oncologist's scheduler.  Apparently, you don't have your initial radiation oncology appointment until after a lumpectomy, not before.  So they moved that appointment.  

I've been doing a lot of thinking over the past couple of days and I'm pretty certain that I'm going to elect to have a mastectomy for the following reasons:

1. I have 2 tumors, not 1

2. tumor #1 is 10 mm & "high grade"

3. tumor #2 is 8 mm & "intermediate grade"

4. So double the possibility of having to go in a 2nd time after a double lumpectomy to scoop out more tissue and get better margins

5. If there was 1 location instead of 2, I'd probably be thinking differently about this.

6. Breast surgeon said that lumpectomy still doesn't rule out future mastectomy. It would depend on how things go in the future.

7. my grandmother had a mastectomy in her late 50s and she lived a good 30 years after that before she died (passed away from something completely unrelated to cancer).

8. the original part did the job it was intended to do.  Now it's turned to the Dark Side of The Force and it's like Emperor Palpatine is trying to kill me. I just want it out.

LisaK12

Thinking positive thoughts for you. I know how hard these decisions are. You have to do what feels right for you.

Some people process things like this more quickly than others. I definitely got my head around it faster than my husband did; he just needed more time. Hopefully your husband will come around and be able to talk with you about it. Don't be afraid to tell him what you need from him. I told my husband flat out that I really needed his support and that while I wanted him to be honest with me about his own feelings and fears, ultimately I needed him to be 100% behind whatever decision I decided to make. I asked him to think about how he would feel if he were the one with the cancer, and what role he would want me to play in that process. He got it and was really my rock through the whole thing.

Good luck to you!

Mymomsgirl

Countdooku it is all very scary, the best advice I have is educate yourself and get second opinions if you are not comfortable with someone. I'm not sure of your size but one option might be a partial mastectomy with immediate reconstruction. It is a longer surgery, but in my opinion worth it to try and avoid a second surgery. I had the tumor removed, IORT (interoperative radiation) and reconstruction (along with a reduction on the right) all at once. My PS said I was a perfect candidate for this option and I'm happy I went this route. I also had 15 rounds of whole breast radiation following my surgery. I will say radiation does change things, my PS kept the affected side a little larger because it shrinks after radiation.

Keep all your options open, this is a great place to see what others have gone through, but remember everyone is different. It is tough, but I think the initial few weeks of tests and waiting are the worst, once I had a plan I felt so much better. Good luck and let us know if you have more questions.

countdooku

Thanks everyone! It's been a bit of a roller coaster, but now that I have the pathology reports from both biopsies, I feel like I have a lot more information than I did before. I'm going to get a mastectomy. I'm just waiting until after I meet with a plastic surgeon tomorrow before I formally inform the breast surgeon (and then get a surgery date scheduled). I should have results of genetic testing by the end of this week or by Monday of next week. So for that, it's just a waiting game.

DH would like us to take a short family weekend trip before my surgery (whenever that gets scheduled for). I'm not ready to decide about that quite yet. I want to see what the mastectomy surgery date will be.

Ingerp

I had one large lumpectomy on left side (8cm x 6cm x 3.3cm) in 2016 and a much smaller one on right side in 2018. I never considered reconstruction for either one. My RO mentioned it initially--I asked her if people would notice it when I was wearing clothing and she said no. I figure we're lopsided anyway, so why bother? We also wear our scars proudly in my family--I figure this is just part of my story. (I was also a little nervous that of women I know who've had mx + reconstruction, several have ended up with *huge* problems from the plastic surgery--much more serious than the mx.) I needed a re-excision after the first one (but not the second one). It's such an easy surgery--just not a big deal in terms of procedure and recovery. Also--just about every DCIS I've heard about is high-grade. I'm not sure that should affect your decision too much. My mother also had a mastectomy about 25 years ago and is still doing great at 90. However, she was told many years later that if she'd had her diagnosis then, they would have recommended lumpectomy.

alto

I'm glad you were told a lumpectomy now wouldn't rule out a mastectomy later. I went for a large lumpectomy (quadrantectomy) and ended up with a mastectomy two months later. Imaging didn't suggest a mastectomy was necessary at first, but the pathology showed they weren't getting around it.

My husband wanted the lumpectomy, too, and he wanted reconstruction when I got the mastectomy. But he said it was my decision and he'd support me either way. He may not love 1/2 flat, but it was a quicker recovery with fewer trips to the hospital. I felt like recon would be too much for me to deal with.

Good luck with your decisions. It's so hard when it all comes at once - at least it was for me. Try to get in touch with what you really want for yourself, regardless of what others think. Lots of people have opinions on this, but you'll be the one living day to day with it.

MBPooch

Thinking of you! I went the mastectomy route and haven't regretted my decision for a minute. I was able to go direct to implant, not sure if that could be an option for you. It was nice to only have one surgery and wake up with breasts that were similar to what I had. My recovery was also fairly easy, all things considered.

Rrobin0200

I second everything that MBPooch said. Our diagnosis and treatment were exactly alike... double mastectomy, direct implants, not a difficult recovery. I have absolutely no regrets. And I like them better now! Best of luck in whatever you decide.. there’s no right or wrong.

countdooku

I also saw a naturopath today who specializes in treating cancer patients. It's not meant to replace cancer treatment, just supplement it. He brought up some good questions for me to ask my endocrinologist. He also gave me a lot of really great recommendations on stuff I can do, eat, oral supplements to take starting now which will help get my immune system up before surgery. He also had some recommendations on other stuff to do after surgery in order to boost the healing process. My friend who's 2 years cancer free from lung cancer swears by this guy, so I figured I'd give it a shot. Their practice is big on ensuring one's reg. cancer doctors are fully informed about what supplements you're taking, so I filled out medical records authorization forms in order to have the naturopath info sent to the breast surgeon and the endocrinologist. And later on when I see a medical oncologist when starting Tamoxifen, I'll do the same with that doctor.

I feel a lot more at ease with things right now. Will have more info tomorrow, of course, after I meet with the reconstructive surgeon.

countdooku

I met with the reconstructive plastic surgeon yesterday. I'm really glad that I went. I've decided to go with a mastectomy with reconstructive surgery. Still waiting on genetic testing results, but I'm not really worried about that because if I do test positive for BRCA 1 or 2, I'm fine with having a double mastectomy. Am waiting on a mastectomy surgery date right now. Breast surgeon has, at my request, cancelled the lumpectomy which was to occur next week. The plastic surgeon agreed w/my decision for a mastectomy. He confirmed what my gut was saying...which was that since I'm on the small size in terms of breast size, having 2 lumpectomies in the same breast would likely result in me looking deformed on that side.

I'm satisfied w/my decision and, frankly, relieved that I've gotten over that big decision-making hurdle. At the same time, I'm grateful that I even had a choice to make because that's not how it turns out for everyone. The plastic surgeon was also supportive of patients who decide that they don't want reconstructive surgery. He said, "It's entirely your decision." That was nice to hear.

Ingerp

countdooku--sounds like your head is in a good, peaceful spot. Congratulations on having the decision behind you.

MBPooch

countdooku - Glad you're over that hurdle as well, always feels good to have a plan!

Blue456

I had a biopsy this week and was told DCIS. Still waiting for more results from biopsy and have an appointment with a genetic counselor and an mri next week. I hate not knowing everything right now. Each time I read s thread or an article I get frightened.

nleerussell

So much of my own timeline and diagnosis is similar to yours. I just hope I can handle it with the grace you are! You rock! Sending positive vibes your way!

countdooku

It's definitely been a roller coaster of emotions. Waiting to find out results was really the worst. I'm still a little anxious in the back regions of my mind over the final pathology results post-surgery, especially over lymph nodes. Those thoughts tend to pop up when it's late at night and I'm trying to fall asleep.

I'm tempted to bring a bra to strap to my head as a hat when they wheel me into the OR. Haha. Maybe I'll write on it with a sharpie marker something like "Say bye bye to the booby!" My husband balked over doing a birthday party in the hospital for our older daughter. I told him that we ARE doing that regardless of what he thinks. Why? Because it'll make her day a little less yucky, that's why. Because we love her. Because if I was a 13 yr old girl, I'd really appreciate cake and pizza and a balloon bouquet and everybody singing me happy birthday. So suck it up, buttercup, that's what we're doing! :-)

I have my Vitamin C infusions scheduled with the naturopath. 1st one is a week from today. then 3 scheduled over 10 days after the surgery. Hubby will drive me to the post-surgery ones.

Thankfully, my boss has been great about all of this. tonight, I have to work for this big IT thing going on at work and she offered to give me a free comp day off before the surgery as a consolation prize. Thank you, I will definitely use that! Younger daughter wants to go to a water park in our area, so maybe we'll do that on a week day some time between now and 6/19.

Hubby is squirreling away offers from friends to help. He's going to ask them to bring us dinner. Our kids are old enough to help with cooking, housework, laundry, and such, so we'll be able to manage all of that for 4 weeks without Mama here doing any of that.

countdooku

Ok, so in order to turn lemons into lemonade, the kids & I have decided that they will write "Darth Boob" with a sad face on my upper right chest and "Jedi Master Boob" with a smiley face on my upper left chest.  After all, surgeons mark the side that they're going to be doing surgery on.  So I might as well make it amusing for myself in the meantime.